3 Too Many

Day 10 of 28 Treatment Free.

Wow – Wednesday already!  Think my eyes were shut before my head hit the pillow last night.  Busy morning as need to meet the repairers at the house at 8am to let them in and load up the last of the stuff to go to Dad’s for storage. Scoff down brekky and take off with Dad.  Take the current drug recipe –  and some pain killers – not for the back, which is going really well at the moment, but for the head.  Getting pains still – the ones that I get Botox treatment for, which are unrelated to the tumors.  But I did get some pain as well on the right side – so have to watch those pains as that’s where the 3 unwanted live.

Get the tradees in, and set their access code to the house.  They set into the work almost straight away – fantastic to see.  There is 6 of them working on the inside of the house and going to be a couple of others start on the outside.  The hardest bit is the lifting of the floors upstairs to find out what is happening (don’t say earthquakes – I think we know that) to cause the floors to drop and break on the I-beam. Not my worry – they can figure it and fix it!  Dad loads the car and then takes off.

Sue takes me into work – nice to be back in the office as it has been a week since I was last there thanks to the lurgy.  Even nicer to see the Press House Care crew (have to come up with a new name for them as not the same flow as the PortaCare Crew).  Must have been away a while as Bernard didn’t even wait for me to get coffee   Catch up with whats been going on over the past week and sit in on a conference call. Bad day with tremors too, just can’t seem to shake them!  Excuse the pun!  Keep riding highs and lows energy wise too which doesn’t help.  Building shaking a bit today, no aftershocks recorded so put it down to the Grant Thornton building been demoed across the Square as they are using a knibbler from the outside cause it is to dangerous apparently to deconstruct internally.  I get picked up at 1:30.  Head (via a handbag shop) to pick Lachlan at 2pm as they are having parent teacher interviews.  Then off home.  Jacob cruises in about 2:45 after scootering home for the first time to the new / temporary house.  He has had a fair day at school as a part of a special charter week – wearing mufti, activities and crap food for sale – why didn’t we do that when I was at St.Thomas’s?  Oh, that’s right, I had to be at school to be able to know they did things like this

Head pains keep coming and going – Botox side.  Ironically I should be getting my top up tomorrow if things were normal! Well we all know that normal changed just after the last one.  They haven’t ruled out starting them again after the 6 months of Chemo or sooner if the migraines on the left come on again badly.  Well seen as the Botox is wearing off, I think that it could be a possibility I’ll be getting more.  Still have to wait and get started on the Chemo.

Feeling drawn so login to work and just cruise through the arvo. Been a very quiet arvo, evening as no energy to do much.  Have Sky again so at least have something half decent to watch.  Work on blog and try to stay awake.  Pain and brain just not helping me accomplish much tonight.  I know I also said that I was going answer comments but guess that’ll wait – sorry.

M&D time been and gone – just need sleep!! Race Yah!!  I’ll win!  Keep safe all – and enjoy the day/arvo/evening.

Kia Kaha.

Day 9 of 28 Treatment Free.

***** HAPPY BIRTHDAY JOH!!! ****

Slept in this morning! Doh!  Have a headache again and not feeling the best but get on with it.  Dad comes and gets me to take me to the our house as the packers are turning up to pack and load the house as EQC move in tomorrow to start the repairs. 

We get there and they are running late so no worries.  Login to work and sit down for a bit as not feeling sharp   Guess I haven’t quite shaken the side effects and lurgy yet.  On a good note though the blob on the left eye is starting to ease some what.  The movers turn up about 9:30am and start straight into it.  Nice to sit back and listen to the sound of packing tape guns ;-(  Well actually I have things to do like sort out what is going out of the garage into storage and what is staying.  No pressure, but if you’ve seen my garage then you will know the state of it!!  No further comment.

 Get thru the day between working, resting and drugs. The truck is loaded and away by 4pm – what a bloody mess – bits and pieces of stuff everywhere. No time to clean it up now as Lachlan is in a Dancing Like the Stars performance at Burnside High tonight with several other schools.  He has been learning Salsa for the past 8 weeks at school.  Fantastic performance by all.  Lachie totally enjoy it and wants to take up dancing – fantastic to hear. 

Home then for a late dinner – thanks Roh for the Nachos (great timing again & yummy as usual).  Call Joh for her birthday and then sit down after saying goodnight to the boys and start doing the blog for the night – slow going though.  Just tried so it’s going to be a short and sweet blog tonight as still not really up to it – sorry.

M&D time been and gone.  Time for sleep.  Hope all have a great day/arvo/evening.  I will get on to answering the comments tomorrow – promise as I will make it a priority.

Kia Kaha.

Day 8 of 28 Treatment Free.

Welcome back.  Sorry for the break in updates but it seems that there is a side effect of the dual treatment they don’t tell you about – the crash!!  Yep, I may have made it through the 6 weeks in fairly good shape, but this past week is those 6 weeks side effects rolled into 1.  I had a good day Monday & Tuesday, then Wednesday started to feel a bit unwell – like I was getting a cold, Thursday getting worse & feeling lousy, Friday was just crappy to say the least and convinced it was a cold.  But Saturday brought out a new low health wise – a headache that just wouldn’t respond to drugs and was a new form of pain too on a pain scale for me it was a 8-9 out of 10 (and I have a very high pain tolerance) with the pain making me feel ill – and feel lousy still.  So give in and decide to use my special green card at the hospital (it lets you jump the queue in A&E cause you have cancer – guess there has to be some benefit to it).  It works too, as walk into A&E and about 10 minutes later I was in my own room and in a flash as open back hospital gown!  Have a nurse come and see me then a doctor, then an IV specialist puts in a lure and takes more blood than I care to have taken in one go!  Then comes the pain-killer – oh they stock some bloody strong drugs – but then again it is apparently it is only a midrange one as I am allergic to opioid based drugs like Morphine,etc.  But what ever they gave me worked – plus had the bonus of making me see fairies with flippers!! Then off for a chest x-ray to be sure all ok there.  Next they bring on my mates – the steroids (I can hear the collective owe no) – yep they’ve upped them back to the max just after I had got within half a tablet of getting off them!  Then came the fluids – 2 IV lines together one antibiotics the other just sodium fluids, then another different dose of antibiotics goes in. ABout 2 hours later I’m up on the Oncology ward  – not that I really remember the trip – but I’m sure the fairy with the flippers was with me and helped

Spend the rest of the day fading in and out of sleep. Manage to wake for dinner – hospital food but as I haven’t eaten all day I don’t really care.  Pain starts coming back about 7pm but hang in there as I want to watch the rugby and it is only on Prime.  Think the nurse wants me to settle into bed as she tries several times to give me the strong pain-killer again.  Instead I settle for a mild couple Panadol and a codeine – works enough.  Good game and afterwards have a good chat to one of the other patients about how they’re going too.  She is in there for a similar reason to me in the crash after finishing the radiation treatment.  She has struggled with the chemo too.  Nice to just be able to talk about cancer things including how others deal with you, sometimes don’t understand what you really mean when you say you’re having a bad day or are actually feeling better than you look.

Off to bed then just in time for the first of the 2 hourly wake up / check up. Then next wake up is at 2:30am where I’m offered for my now throbbing head Panadol or a half a codeine – not both and no strong pain-killer.  Ask why as it is over 5 hours since I had my last ones – apparently they aren’t charted to be offered anymore than that together, even though I could have all 3 together before.  Tell the nurse I just flag it and wait till the morning when the Doctor can figure out why I’ll be in the same way as the day before, cause they didn’t chart it – yep nose came off to spite the face big time!!  Mental note – make sure to take own meds in with me as previously.  Woken several times more than it’s brekky time – Weetbix, and cold toast – eat it all and I’ll be considered for release.  Get no more pain killers either as head not to bad and I’ll wait. Docs finally get there and decide to release me – yay. 

Home then to rest up while starting to pack up the house as EQC are starting repairs on Wednesday and the movers are coming in on Tuesday to pack and remove the furniture.  We have to move what we are living with in to the temp house, and clean out the garage!  So not much to do.  So between rest and little bursts of doing things  – and they are little bursts – I need to sit down just about from going upstairs.  So forced rest from worn out body.

Monday comes with a slow start and starting to feel like heading down hill again.  Stay home as going to rest, work, rest, pack bits, rest – get the routine.  Yep stuck to that routine too.  Thanks Nick and Anna and boys for coming over to help cart some stuff over – appreciate the help.  Pretty much the day rolled on like that.  So there we have it – not quite a full coverage of the past 5 days – but one of the more important happenings.  Oh a couple of the other ones was the good day for the lads had at footy on Saturday – all 3 teams won!  And on Sunday Jacob raced in the final of the maze thing on What Now –  unfortunately he came 2nd and Lachlan was in the Tongue Twister challenge but didn’t do to well either – oh well they tried.

Anyway – take care folks wherever you’re reading this from.

Kia Kaha.

Just a quick update as to why I have been absent from doing the rambles – As I mentioned on Thursday (I think) quickly that I wasn’t feeling well. Well Friday I went down further and Saturday I was so bad with head pain and general feeling lousy that I ended up back in hospital and only got freed again this afternoon.  Needless to say I am still drained and tired but a lot better than yesterday.

I will do a proper update over the missing days tomorrow – so till then take care all.

Kia Kaha.

Day 4 of 28 Treatment Free!!

Will do ramble later/tomorrow as feeling ill as   Just a cold or something but just stuffed – the joys of not much of an immune system

Going to do M&D and bed soon as keep falling asleep. 

Sorry folks.

Kia Kaha.

Day 3 of 28 Treatment Free!!

 Restless night again with cramp this time been the star performer in wanting to keep me awake – calves, soles of feet, hands, all sore at different times.  Get up at 6am & head into the gym to stretch out the muscles a bit and try to start loosing some of these extra kilos that I have found.  Manage 40mins in there before wearing out – still a fairly good effort.  Have a bit of a moment getting dressed as the radio plays a song that I have chosen to have played at my funeral – and don’t ask, cause I’m not telling what it is.  Oh and don’t get horrified that I mentioned the f word – not the 4 letter one either.

On with the rest of the day.  Jono is taking me to work today so no big rush.  Dad turns up to take Jacob to school, and Lachlan & Sue head off their way.  Fairly quiet sort of day watching servers again and trying to find missing pages from the archive.  Health wise is not good – thinking I have picked up a lurgy again.  Start to feel lousy and tired.  More so as the day wears on.  Start to get aches all over  – and the cramps are coming back again, in my hand this time.  I hate cramp more than anything.  Will make an electrolyte drink when I get home to see if that’ll help.  Head off at 2:30 as fading very fast.

Get home and do some research on the connection between the steroid and Cushing’s Syndrome.  Interesting as it seems there may be a link between some of the things that I have been experiencing and high/prolonged use of the type of steroid I’m on.  I will bring this up with then doctor next week when I have a meeting with them and see what they have to say about it.  Get a call from the Neurologist in Dunedin that runs the Botox trial and they are going to miss this course (the tumours are not related to the migraines I get). He will review this before the next session in relation with the Chemo Doctor.

Have dinner and start to feel a bit better than earlier.  So get on with the blog while I can.  Slow going as just can’t focus as have a fuzzy head   But it has to be done to satisfy you my faithful readers   Actually I need to do it to as it helps me, and one day in the distant future the boys will hopefully read it and understand what it’s been like for me and others.

Anyhow, slow going so will sign off now as things to do before heading to bed for an earlish night.  Keep happy & safe all.

Kia Kaha.

Day 2 of 28 Treatment Free!! Nice to write that!!! No Radiation or Chemo.

Mr Slack bum slept  through the alarm so missed the gym.  Nice to wake up fairly pain-free and feeling – well normal – after a full nights sleep with no pain.  All rather exciting really – well it is for me.  The blob on my eye even seems to be easing up.  Get on with the day as there is still work to be done.

Dad turns up to take the boys to school but there is a misunderstanding about who he is taking and has only brought the Ute, so he takes Jacob.  Sue, Lachlan and I head off into the gloomy fog.

Get into work early and start the day watching the servers for slowdowns. Boring job but they want it done as we have ongoing issues at the moment with system slowdowns on Tuesdays and IT are on alert. It makes for a slow day really but last until 3pm when Dad and the boys pick me up.  Head home and login to work to keep an eye on things still.  Get dinner ready as well while I still have energy left.  Roh has dropped off a lovely Quiche for dinner tonight which is awesome – thanks again Roh.  Also get tomorrow’s dinner ready too so it marinades overnight.

Start on blog and watch NCIS.  Quiet, pain-free night – this is nice   M&D time will be at 10pm as normal.  Otherwise – this is going to be the shortest ramble I think – as I’m tired but cruising still and enjoying not pumping myself full of poison.  Hope you’ve had a smooth as day/arvo/evening.

Kia Kaha.

Day 1 of 28 Treatment Free!!  Nice to write that!!!  No Radiation or Chemo.

Seems kind of funny having that as the starting line.  I don’t really know how I am meant to be physically or mentally at this point in everything – but treatment wise – battle round 1 down!!  I think back to how many medical staff last week commented how well I had done through it all – so I guess that I can take comfort in that.  The only thing I wish I could change was that I could drop the steroids all together (though I will be off them in 2 weeks time for 2 weeks) and also off the other fuzzy and seizure drugs – these make you feel fuzzy 3 times a day – yipee NOT!! 

On with the day anyway. Celebrated a restless sleep (bloody pain) and no more treatment with a sleep in – until 7am.  Wahoo – an hour extra sleep.  Not sure if it is good as it means that the day is now a rush where previously I was well ahead of things and ready to go early.  Planning on going into the gym in the morning so back to the early starts – may as well try to shed some of this weight while I can.  And don’t say don’t worry about it – I now have an extra 17kg to lose again!  Rush round like, well, a “Headless Chook” (hence the nickname Headless that I have).  odd not having to watch the clock for drug timing more for OMG – I have to be at work now.  Jono is picking me up at 8:30 so thankfully I have some time to have brekky.

Get in the office and settle in to work – have I said how awesome it is to be working back in an office building with space and warmth, and light and – bets of all – quiet.  No constant traffic off John’s Road.  I guess even when town is open again – some time – 5 floors up it will be fairly quiet still.  Cruisy day at work, and Karen Slee drops me home about 2:30 as I’m fading and also the boys are going to be home about 3 and Sue has to work all day.

The boys are little troopers and get on and help out around the house with chores.  Then do their homework and chill out a bit.  I get tea ready – thanks Roh for the yummy Pumpkin soup.  Sit down then to get the blog done  – sorry it’s going to be short and sweet today pretty much as it is just really another day.  Actually that’s a bit of a talking point I had with someone over the weekend.(sorry it may just get a wee bit longer).  The question of how I am dealing with the fate I am facing, and if I treat each day as a special one, and if I have a bucket list.  The short answers to these are, dealing with it – I have thought about my faith and it is no different to anyone elses really, just mine is going to be a bit sooner than most of the people I know, but I also had time alone to think & accept what is happening, & what do I have to be angry or sad about – it won’t change whats happened.  I can only be positive & work positively towards staying around as long as possible for everyone including myself.  I am a firm believer in the power of positive thought.  As for treating each day as a special one – well isn’t everyday meant to be special even if you don’t have a timer on your life (and no I don’t know how long I have  – which in a way makes it easier to deal with too I think).  While going to work and doing things like that are routine, they are also special as it is the people and things you do.  Always do something nice for someone each day – even just ask someone how their day is or smile and say thank you – it costs nothing and may be the only time that day someone takes an interest in them but it does make a difference.  As for bucket list – I don’t think so – unless I can add driving, drinking and footy!!  Hangon  – right order needs to be drive to footy then have a drink after to celebrate – there all done in one day!! 

Enough waffle – things to get on with and an early night as an early start in the morning if I’m intending to hit the gym.  M&D time still about 10 then bed.

Hope you all have had or are having a good day/arvo/evening – keep safe and be happy.  Remember, be polite and smile at someone as that smile will come back to you

Kia Kaha.

T Day = 42 (Chemo only in weekends) 0 Chemo to go this round.

Round 1 down!!!!  No more treatment (Radiation or Chemo) for a month. Seems quite strange actually.  Get up at 5:45am as last lot of Chemo still to take. Terrible sleep as pain and restless.  Got to bed about 1:30am so lacking sleep too.  Bloody freezing morning too. Into the routine as normal – and on the pain killers quickly too.  Damn things aren’t working though. Make a cuppa tea and do my stretches to see if the back and legs will ease up a bit. Getting cramp in my feet now too – ouch!!  Sit down and do Saturdays blog seen as I didn’t finish it yesterday – I know slack bum.  Get it done finally with a bit of an effort – hard remembering what I did the day before today.

Slow cruisy day ahead I think as my back is giving me hell today and feel lousy all up – the irony of it all – last day and everything craps out.  Mass sleepins for others today here – nothing to be up for and to bloody cold.  Even Lachie and his mate are staying in bed chatting.  Jacob comes down to see me and rugs up and watches What Now then decides to cook pancakes for the boys for brekky as a treat.  Good lad.  Have a hot shower and pain killers to see if I can get on top of the pain – head is joining the back in the pain stakes too.

Hobble around helping Jacob with the pancake cooking.  Pain killer is finally starting to take the edge off the back.  Dad turns up with Lachie’s birthday present –  a very cool radio controlled Front End Loader. He is looking very relaxed and happy and have a good chat.  Lachie is happy with his pressie.  Mum turns up then as well to see us and get some printing done.  She is on her lunch break so in a hurry.  Shaun turns up to pickup Lachies mate. Mum leaves after a coffee & with her printing.  Dad leaves not long after too.  Ahh – to many people at once

Plod on with the day – cruisy – the boys are happily entertaining themselves.  Suns out I’m just plodding on trying to get on top of this bloody pain!!  Hang out some washing then cook some lunch for the boys. Suns out so at least it’s sort of warm.  Get firewood in but bloody agony so takes several trips.  Watch Alvin and the Chipmunks – Chipwrecked – and try not to sleep through it – well all of it anyway DInner time then, watch TV and do blog.

Boring very,very quiet day all up as back and head pain has won the day today unfortunately   I hope that i a week’s time I will be in a different place with this pain, etc. as I will be off the drugs for a week by then.  M&D time – yep these will continue as normal.  Hope you’ve had a happy and safe weekend all.

Kia Kaha.

T Day = 41 (Chemo only in weekends) 2 Chemo to go this round.

Early start – 5am as pain getting to me – still half asleep and actually think it is 6am so rush (more a stumble/shuffle) downstairs and then realise as I’m about to down the first drugs that it is 5am!  Dumbass! Oh well pain killers instead –  and they take their sweet time to work too.  Don’t think that the boys footy will be on today as still some heavy rain showers coming over & freezing cold.  Finally get to 6am and have the first round for the day.  Yay the pain killers finally do their thing too and ease the aches – great to make it to the end of 6 weeks and crap out now – fail!!  No all going sweetly, and will do even more so once I get off these bloody steroids in the next 2 weeks.

Have a bit of time to think about things – Wow 2 days to go!! 6 weeks ago tomorrow I was about to start into the real unknown in all this, of the Radiation and Chemo treatment together.  And was concerned about the impact it was going to have on others, as it would also mean that the battle I have would become visual to people – lost hair (yes I did have a number 1 but there was still hair there), weight gain/loss (well that would have been nice to loose it), fatigue, Wilson (and his mate the random left leg), etc.  6 weeks on I have had nothing but positive from all the medical folks I have dealt with this week, don’t give a rat arse now really about people staring at my lack of hair (I can’t handle people who give pitiful looks cause they know you have Cancer), my weight is, well about to kill the scales, – but I’m allowed to gym it again – so will set a new routine for the mornings, Wilson tries to return occasionally but my right side fried brain soon reigns him back in.  And as for the attitude – take a bow all – the positive comments, attitude, energy has helped massively.  I have also had some very dark moments along the way in the 6 weeks and a couple of very deep conversations with people who have taken time to assess themselves should they be facing a similar scenario, with interesting comments from them about how they would deal with it and how I am in such a different way.   As you may gather, I don’t do things by the norm, so this is no different. There is only approx. 50 cases worldwide per year of these tumors, I scored 3 in one go (no I’m not boasting – believe me I would rather not have had 1 small one), I have in some ways got through the first round of treatment fairly easily, I haven’t really suffered any major effect from the 3 unwanted (slight paralysis on left side of face & slurred speech that’s it), so I wonder some days what the hell I’m treating really.  I am not going to lay down and be done with quickly, as I’ve said early on, I didn’t ask for them, so if they intend on been part of me then they’ll have to adjust to the way I live not be adjusted to them.  I have too much to be here for still – but by the same token I have also accepted my own mortality.  I have also accepted this is now the newly adjusted normality for my life. This is a huge thing to get over mentally as you do take time to view the world in a different way, but the best thing out of this is that I am still here and have time to say goodbye, I’m not on life support after an accident or the likes with someone having to decide to switch off a machine.  OK – enough of the deep for now – on with a happy day

7am and second to last Chemo for this round about to be taken.  About 7:30 the sucker punch feeling to the back will come on – hell I won’t miss that feeling!!  Wait for the cancellations on the radio and find out that all footy is on so brekky underway and make sure rug up warm for all.  Sue and Lachlan head to Avonhead Park for his game against FC2011 about 8:55.  Nevil, Jacob & I head to Halswell Domain for Jacob’s game an hour later.  Still showers and freezing cold but starting to look like it might improve slightly.  Lachlan team win 5-4 – good result.  Jacobs team start well – and go 2-0 up, then it turns a bit of a mare and they end up going down – 9-4 with some very dubious reffing from their coach.  Head home then wet & cold but happy that got out to see a game.  Have Pam & Karl coming over for lunch today.  Have a nice lunch and catch up then they head off.  Nevil & Rose decide to hit the road too not long afterwards as they have a bigger drive ahead of them.  Thank you for coming down and helping out and been my driver.  It is all very much appreciated.

I am drained of energy and want to head off to the Halswell Pinkies game up at Centennial Park (not far from home)  but really think I need to rest first or I’ll collapse.  Lay down in the bay window and the sun is out, so a recipe for sleeping!  Out like a light then in a couple of seconds.  Wake an hour later.  Jacob is heading to stay at a mates place and Lachie has a mate coming to stay.  It’s also about half time in the game so decide to wander off to see them.  NIce walk – but my back is in agony.  Oh well, suck it up and keep moving.  Get to the park and all tided up at 1-1.  Better game to watch compared to a couple of the past ones.  Have a good catch up with the lads.  Eventually leave about 5pm for our club rooms so hitch a ride with Fish. Have a yarn with a others at the club rooms then FIsh drops me round at Andy & Roh’s house to watch the rugby & have dinner.  Thanks man – appreciate it.

Good evening – just need to stay on top of the pain killers as back and joints are hurting a lot.  Also feeling the cold but it is freezing outside so to be expected!  Get the call that Jacob is feeling ill so Andy & Sue go to collect him. Good game of rugby by the Irish – bloody AB’s lucky to get away with it.  Nothing flattering could be written about the AB’s game tonight but they could write a lot about the Irish.  Have an awesome Fettucine – thanks Andy for dinner. Watch (well try to between dozing off) the Aussie vs Wales game.  Wake at the end when Aussie have just escaped the loss – tin bums!  Andy then drops us home.

Get the boys settled and I’m on the pain killers but they’re just not working FInally go to bed about 1:30am.  So it was a late M&D time last night – sorry.  Also sorry about the late blogging.  Hope everyone has had a wonderful Saturday and kept as warm and dry as possible.  Have agreat Sunday all.  Will post up tonight earlier – promise as I’ll be needing sleep.

Kia Kaha.